THE ROLE OF PARENTS IN END-OF-LIFE DECISIONS IN SEVERELY ILL NEWBORNS: RESULTS FROM A NATIONWIDE STUDY IN THE NETHERLANDS

Background End-of-life (EOL) decisions in severely ill newborns are made in close consultation with parents. However, differences of opinion about stopping or continuing life support might occur, especially in situations when the prognosis for the child is considered very poor. Insight in the decision-making process may help to minimise the chances of unresolved disagreement. Aim We studied EOL decisions in newborns with a poor prognosis to determine the frequency and background of differences of opinion. Design and Method We reviewed the medical files of 367 newborns who died between October 2005 and September 2006 in the 10 Dutch neonatal intensive care units and identified 147 deaths preceded by an EOL decision based on the child’s poor prognosis. Interviews with the responsible neonatologist were used to obtain details about the decision-making process. Results Parents were involved in all EOL decisions. Consensus was ultimately reached in all cases. EOL decisions were postponed because of disagreement within the medical team in 6/147 cases (4%) and because of differences of opinion between the team and the parents in 18/147 cases. In most cases (14/18) parents wanted continuation of treatment, whereas the team wanted withdrawal of life support. Consensus was reached within 24 h (median) by allowing time for more meetings or because the child’s condition deteriorated. Conclusion Parents were involved in all EOL decisions based on the infant’s poor prognosis. Differences of opinion occurred within the team (4%) and between the team and the parents (12%) and they were resolved by postponing the EOL decision to allow time for more meetings.